Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 10
Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(6), 2021, pp.1489-1498.
- Publisher:
- Wiley
Rationale: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications: The implications for end-of-life care and mortality research are discussed. (Edited publisher abstract)
Reflecting on change: consumers' views of the impact of the All-Wales strategy
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Mental Handicap, 21(4), December 1993, pp.128-136.
- Publisher:
- British Institute of Mental Handicap
Reports on the views of users of services for people with learning difficulties in Wales living in the community.
Place of death of people with intellectual disabilities: an exploratory study of death and dying within community disability service settings
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 25(3), 2021, pp.296-311.
- Publisher:
- Sage
- Place of publication:
- London
This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed. (Edited publisher abstract)
Last months of life of people with intellectual disabilities: a UK population‐based study of death and dying in intellectual disability community services
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1245-1258.
- Publisher:
- Wiley
Background: Population‐based data are presented on the nature of dying in intellectual disability services. Methods: A retrospective survey was conducted over 18 months with a sample of UK‐based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES‐SF. Results: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. Conclusion: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes. (Edited publisher abstract)
‘Being there’: the experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilitie
- Author:
- TODD Stuart
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.215-230.
- Publisher:
- Wiley
Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from ‘being there’ with individuals over those phases. (Publisher abstract)
When it comes to dying, what difference does learning disability make?
- Author:
- TODD Stuart
- Journal article citation:
- Llais, 74, Autumn 2004, pp.6-10.
- Publisher:
- Learning Disability Wales
Outlines a research study on the effects of the death of a person with learning disability on staff and parents and the support services did or did not provide.
Death does not become us: the absence of death and dying in intellectual disability research
- Author:
- TODD Stuart
- Journal article citation:
- Journal of Gerontological Social Work, 38(1/2), 2002, pp.225-239.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The social issues of death, dying and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. It is suggested that these issues have been discounted with some important consequences for the way intellectualdisability is perceived.
Family dilemmas and secrets: parents' disclosure of information to their adult offspring with learning disabilities
- Authors:
- TODD Stuart, SHEARN Julia
- Journal article citation:
- Disability and Society, 12(3), June 1997, pp.341-366.
- Publisher:
- Taylor and Francis
Describes the role parents play in providing knowledge of learning disability to their adult offspring with learning disabilities. Data were derived from an in-depth qualitative study of the nature of parent-adult-offspring co-residence. The findings reveal that while parents recognised and had to deal with the stigma learning disability exerted in their own lives, they had taken steps to prevent their adult offspring from having to deal with similar difficulties. It is argued that it remains the case that learning disability is treated as a stigmatised identity and as such is rendered invisible through the strategic control of information. However, findings point towards the conclusion that there has been a cultural reversal in how this process is managed.
Struggles with time: the careers of parents with adult sons and daughters with learning disabilities
- Authors:
- TODD Stuart, SHEARN Julia
- Journal article citation:
- Disability and Society, 11(3), September 1996, pp.379-401.
- Publisher:
- Taylor and Francis
The experiences of parents with adult offspring with learning disability and the meanings their parental careers have for them, has been the subject of very little empirical research. This paper describes and examines some of the features that have given shape and meaning to the day to day lives of parents of co-resident adults with learning disabilities. Their accounts of their situations reveal that 'time' was a factor of some importance. Participants suggested that socialisation into the parental role was one that continued over the life course. In addition, they also felt that the services they received were based upon an inadequate and too narrow an understanding of how they experienced 'time'. The data reveal that both 'over time' and 'in time', parents struggled to maintain a set of aspirations for a typical life. The data show that for many parents there was a slow accommodation to the constraints of service provision and, as a result, their needs for service support became less extensive.
Time and the person: the impact of support services on the lives of parents of adults with intellectual disabilities
- Authors:
- TODD Stuart, SHEARN Julia
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 9(1), 1996, pp.40-60.
- Publisher:
- Wiley
Employing data derived from a qualitative, in depth study of the experiences of parents of co-resident adult offspring with intellectual disabilities, this article examines some features of parents' lives which shape parents' need for support and their assessment of the adequacy of support received. Support services were positively received in the what they interrupted, what would otherwise be, a continuous cycle of care. The development of support services is discussed in terms of two phases. The first phase involves supporting parents through sharing the parental workload. The second involves supporting the person and his/her range of personal aspirations and interests. The implications which this latter phase may have for other forms of service provision are briefly discussed.